How are GPs reacting to patients who are self medicate with imported B12?
Is it better to not inform them, or should one tell them what one is doing?
I suppose that if there is (hopefully) a major improvement, they would know about it by observation.
I have been trying for 14 months to get my surgery to give me alternate-day B12 injections. As with many other people I guess, they tell me I don’t need it because I’m not anaemic. But you can have a B12 deficiency even if you are not anaemic, so have been told.
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Oundle
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I told mine that I had self diagnosed B12 deficiency during lockdown and was injecting daily. They just told me to carry on doing that, there was nothing they could offer me in terms of any referrals to see why I was B12 deficient, and the only thing they would do is test my bloods once a year.
Yes you can. My bloods were all in range at the start apart from inflammatory markers
And a very low serum b12
They prescribed alternate day injections after loading eventually as I was so ill and nothing elses found to treat.
It was backed up by a neurologist and clearly stated in bnf guidelines on frequency.
I have 2 weekly on prescription still at present most of which iself inject.
I have chosen not to declare I'm 'topping up' it's been easy as not seen a doctor since Frbruary .Also theres at least one doctor in the practice that has opposed all my treatment and referrals. Not sure why . Fortunately my Gp eventually made her own mind up and didnt succumb unto peer pressure. It happened with help from her and after trialling 2 drugs that made me worse I refused further medication unless they understood how it would help. As it was a trail and error with what I considered heavy drugs. Difficult to get iff even after 3 weeks.
I am in the position with the 2 weekly recorded on my medical notes though.
Thanks for that. I emailed as I needed NICE stipulation of alternate-day injections of B12, on record I have 15+ neurological symptoms, and I have no reply from the surgery to my email of eight working days ago.
I told my GP and he flipped his lid when I told him that I was buying B12 from the Interwebs. Then I explained that everybody in Germany bought their B12 from the same place as I was. He calmed down a bit after that.
Then flipped again when I told him I got needles and syringes from Amazon (sadly no longer).
Thanks for that. You will see my position from these other replies. I can see that I will have to obtain B12 from abroad unless there is an early change.
Depends entirely on the GP and how much they understand about B12 deficiency.
My usual GP was fine about it, but she had been treating me with frequent injections for quite a while and knew that it brought about improvement. (2 a week for 6 months)
When it finally stopped working, she sent me to consultants for tests and answers. Eventually, I started self injecting every other day. I told her the day after I started.
While she was on holiday, I had to see another GP at the practice because of heart arrhythmia increasing. When it came out that I was self injecting, I saw his panic: he went straight to the practice and had my NHS injections stopped. This was done without discussion with me or my GP who was still on holiday. He sent me a letter - if I gave up self injecting and accepted their treatment (1 injection every 2 months by then), my NHS injections would be reinstated.
I was very upset at the time. Now not at all. It was not a choice for me: I would not have lasted a week without deterioration and I wasn't prepared to lie about self injecting. I did not bother to reply to his letter and have never seen him since.
I now only see my usual GP, who diagnosed me quite early on with functional B12 deficiency. The only answer to this that I am able to find is to keep B12 levels high by frequent injections. I continue to do this, have reduced injections to one every 3 days, and have seen very gradual improvements over the last 3 years.
Thank you Cherylclaire. An extremely clear and frank answer. I can quite see my self having to import the B12 because my GP, (and possibly the whole clinic), seem to be ignoring my pleas. My symptoms began in the late 1970s, my neurologist retracted the MS diagnosis in 2009 , Saying that he did not know what it was. Neither did my GP, who said google it! So, 40 years with no diagnosis! My most recent email to my surgery has been ignored now for eight working days!
Don’t think it would make any difference. I’ve CCed all the doctors in the practice. The only other local surgery have said they would not prescribe.
Sorry Oundle but I’m one of the tell them nothing brigade.I self inject with b12 from the German suppliers and I do so every other day to stay as well as I can.Every step of the way since someone on the thyroid forum said to me test all your vitamins and minerals and optimise them then advised me to visit this forum,I’ve had to pay to have whatever tests I could manage to work out I needed.I had such a lot of help from our members here and began to learn all about b12 deficiency.I pushed and swotted until I finally went through every test I could to confirm that yes I did have pernicious anemia and all the things that these so called humanitarian gps said was in my head or I needed statins and anti depressants for was complete utter bulls..t.
I get no support from them for anything and I have to pay private consultants to get any results and sometimes I’m lucky that they can manage to bully the gp into doing some testing on the nhs that I worked and paid into since leaving school at 15.,most times I can’t and have to pay,ie B12 active,MMA,I.Factor,dexa scans cat scans mri scans Ultra sound scans all private and all with findings that justify everything I said was wrong.
Will I tell gps ? Not a chance in hell it gives them an excuse to stop the miserly one injection I get from the nhs every three months as far as I’m concerned so I’d say no tell them nothing and take control back.best of luck xx
I told mine nothing too after a long battle trying to state the obvious re blood levels being high, needing to treat the symptoms etc. I bought the necessary B12, syringes, needles etc and injected weekly after symptoms came back following GP loading doses. I now got the distance between jabs to 3 weekly with no more stressful docs arguments and it’s so easy. They can test my blood and rant as much as they like, it will be high but they won’t know whether from jabs or tabs. I’ll save the GP visits for things I really can’t handle myself, such as broken bones etc
I told my GP that I had to self-inject , and my NHS injections were withdrawn . The trouble with not telling the GP that you self inject is that they then believe that the miserly one injection every 3months they allow you , is sufficient . My GP told me that I was the only patient in the practice who self-injected . I actually obtain B12 ampoules from Germany for 2 patients at my surgery , so I know that it’s not true , but cannot let on , as those patients don’t dare to tell their GP ! How ridiculous is that ?
I remember my GP saying to me that the one other patient she had with functional B12 deficiency had managed very well for 10 years on 1 injection every 3 months. I asked her how she could be certain that she didn't self inject too, but just hadn't told her.
Although I did not bother to reply to the other GP's letter, I did recently send a letter (snail mail) to the Practice Manager to ask that the practice continue to ensure patients receive their B12 injections during the pandemic.
This was in reaction to all the devastated people posting here who had had their injections stopped suddenly, some being told to buy tablets. I realised that I wasn't sure what my own practice had decided to do.
It is not an unreasonable request that a long-term successful treatment be continued (especially for those who have been diagnosed with an incurable condition)- or that any change in treatment, frequency, dosage - or cessation of it - be discussed with the patient before implementation.
Once winter flu jabs are being given, there really is no further excuse for practices to withhold B12 treatment in any case.
If it is truly about the cost of a nurse's time, perhaps they could use a double syringe - like epoxy resin !
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